NEW COMMITTEE ORGANIZED FOR PARENTS OF THE DEAF-BLINDBy Barbara CheadlePresidentParents of Blind Children DivisionNational Federation of the Blind

Over the past three or so years, I have noticed that more and more parents of children with dual hearing/vision losses were becoming active in our NFB Parents of Blind Children Division. Someday, I thought, the time will be ripe to organize a committee to address their special concerns. The time and place turned out to be the 1992 National Federation of the Blind Covention in Charlotte, North Carolina.

Four dynamic, committed, and hard-driving parents met with me at National Convention to discuss goals and strategies of the new committee. These parents are: Julie Hunter and Chris Jubb of Colorado, both of whom have teenage daughters who are blind and hearing impaired; Sally Ruemmler of Kansas who has a twelve year old daughter who is deaf-blind; and Kathy Andrus of Ohio who is the mother of a lively, curious deaf-blind toddler. The following "Open Letter" and networking "Questionnaire" is the first action taken by the new committee.

Given the tenacity, organizing ability, and other skills of these parents—and in particular the chairperson, Julie Hunter—you can be sure we will be hearing more from this very important committee in the years to come!

AN OPEN LETTER TO PARENTS/CAREGIVERS OF CHILDREN WITH SENSORY LOSSES IN VISION AND HEARING

Hello! I am Julie Hunter, and I am writing to you as a member of the Parents of Blind Children Division of the National Federation of the Blind and as a parent of a deaf-blind child. As the chairman of the newly formed POBC Committee on Concerns of Parents of Deaf-Blind Children, I am anxious to introduce myself to you and my daughter, Lauren, and hopefully to interest you in participating in our effort to network parents whose children have sensory losses in both vision and hearing.

Perhaps you have never thought of your child as deaf-blind. The totally deaf and totally blind child is a rarity in our population. Perhaps, like my child, one of the sensory losses is total while the other is mild. In our case, my daughter is totally blind and has a mild but possibly progressive hearing loss. Because my child's blindness has always been the focus of our educational efforts, we know little about the problems of the deaf. Or, perhaps your child is primarily deaf but has some vision problems. In that case, you have been immersed in the issues of the deaf, but have not necessarily dealt with the blindness. In this area of dual sensory loss in vision and hearing we expect to network with parents whose children represent the entire spectrum of impairments in both areas—vision and hearing.

What is the purpose of the Committee on Concerns of Parents of deaf-blind Children? Our mission is basically three-fold:

l. Education and Sharing of Resources

The Committee is in the process of putting together a resource packet of information about deafness and blindness. This will help parents of deaf/blind children become knowledgeable in both areas of their child's sensory loss. By sharing knowledge and resources we can become the best advocates for our children's education and help prepare them for active, independent adulthoods. If you have any information or materials which might be useful for the resource packet, please send them to me at the address below.

2. Networking Parents

Enclosed is a questionnaire. By completing and returning this to the Committee, we can begin to build a support network. Would you like to become acquainted with other parents whose children have close to the same degree of loss as your child? What are their expectations for their child? Is their child learning Braille? Or Sign Language? What are they doing to prepare their child to be an independent, wage-earning adult? How are they handling socialization issues with their child now? Perhaps you have a deaf-blind baby and would like to talk to someone else in your situation. In your own community it may not be possible to find another parent who shares your problems and concerns, but by reaching out across the land we can touch one another and in doing so work together to create a positive future for our deaf-blind children.

3. Networking with Deaf-Blind Adults

The Committee plans to work with the National Federation of the Blind Committee on Concerns of the Deaf-Blind. In this way we can have adult deaf-blind role models for our children and we can keep in touch with the problems and issues faced by deaf-blind individuals as adults. Through this contact we can keep in touch with the reality of what is available to the deaf-blind adult today. Then we can do our part to make changes for our children's tomorrows.

We cordially invite you to become a part of the Committee on Concerns of Parents of Deaf-Blind Children regardless of the degree of sensory loss of your child. Together, and with the support of the National Federation of the Blind, we can make a difference for ourselves and our children.

Do you wish to network with other parents? [ ] Yes. I wish to network with other parents. Please send me the name and address of a parent(s) in a like situation. I also give permission for my name, address, and phone number to be shared with another parent(s) in a like situation.

[ ] No.I do not wish to network at this time, but I do wish to be on the committee's mailing list.

Comments or Suggestions:

We are an all-volunteer organization and committee. To help defray costs, we urge parents who want to receive information and mutual support from the Committee on Concerns of Parents of Deaf-Blind Children to join the Parents of Blind Children Division of the NFB. Yearly dues are $8.00 per family. This includes a subscription to Future Reflections.

[ ] Please send me membership information about the National Federation of the Blind Parents of Blind Children Division.

Do you receive the National Federation of the Blind Parents of Blind Children magazine, Future Reflections?[ ]Yes [ ]No

National Braille Press offers a Braille Book-of-the-Month Club. Books are regular print and picture books with Braille pages added. The grade level (preschool to third grade), cost, and type of book or books vary from month to month. No membership fee, no minimum purchase required. Also offers a Braille manual for parents who wish to learn Braille.

The NATB publishes a catalog of titles of miscellaneous Braille books—such as cookbooks, children's literature, knitting and crocheting patterns, music, etc.—transcribed by various agencies and individuals around the country. NATB does not loan or sell these books. The purpose of the catalog is to help transcribers avoid duplication and to assist agencies and individuals in locating Braille material not registered with APH. (Currently, there is no central registry of all Braille books and materials transcribed in the U.S.). About 20 agencies list Braille titles with NAPB, and over 250 children's books have been registered. The catalog is $4.00. There is no fee for agencies or individuals who wish to register Braille books with the service.